The First Days and Weeks post E

Caregivers, family members, loved ones... .this section is created for you. It contains facts which may be desperately sought by folks recently touched by encephalitis.

The following is a collection of thoughts and ideas shared since Encephalitis Global was created in September 2000. Please remember that no one at this site is a medical representative in any way. We are a support group, offering suggestions and strength to each other. We have used the female gender for sample suggestions… either would do, of course.

Post encephalitis - the first days

What is encephalitis?

Encephalitis is swelling (inflammation) of the brain. Swelling, which causes permanent damage. You may know of the word meningitis… which is swelling to the lining of the brain. Encephalitis happens one-seventh as often… and it touches the more inner area of the brain. Weeks, months, after encephalitis touches, its survivors and loved ones must learn the most difficult lesson. Patience. Patience to play a waiting game, while neighbouring areas of the brain make all efforts to pick up the slack, and learn and assume the role of the damaged area.

What does it feel like to them?

“My name is Wendy. In April 1999, on a Thursday morning, I had a wee bit of a headache on arrival at work. I told the boss I was going home.... and that's the last thing I remember. I do not remember driving home. I do not remember being cranky at home through the weekend. I do not remember my Goodspouse taking me to Emergency on the following Monday.... he being told that I just had the flu.... and he standing his ground, until a neurologist walked by, and realized what was going on. Herpes Simplex Encephalitis. To a middle age woman, who's never even had a cold sore in her life! Even now, I don't recall the following four weeks. “

It's my feeling that when the brain is in a crisis mode; it shuts down any of the non-essential services, to focus all attention and strength in the area in crisis. In that sense, my memory just was not functioning, in any way. From the outside looking in, I was walking and talking..... it is just that I don't remember it.

What can the family do?

Survival, basic survival comes first. Second? Learn more. Then? One day at a time. Yes, it sounds trite, sounds like a saying from a 70's TV show.... but it is true. Some of the folks here are survivors, some are family and friends of encephalitis, and many are parents of young survivors. Everyone here has a piece of advice for you, a suggestion for you. Information is power, and you need to give yourself all the strength you can to assist your loved one.

What do I say when I visit her?

Now? Just hang in, and hang on. The visits, the gentle visits. Yes! And, perhaps, to reassure. Not to expect magic, or to test or push your loved one to show his limitations. Speak…. With memories, and thoughts. Do not request/demand answers or replies. That will really fluster a survivor who is trying so hard!!

My adult brother and sister used to come and visit me, and discuss our childhood. For hours, I am told. I have absolutely NO memory of that time. But. But.... it's my opinion that support from my family (and a large does of blessing from above!) added just as much strength to my survival, as the excellent neuro care I received.

She looks so sad, acts so weird!

I have absolutely no memory of that time. I’ve been told that I was known to hide my gown under my pillow…. Then when no-one was looking, I would rip out my intravenous needles, and dash for the door. When staff stopped me and asked, “Why?”… I would tell them, “I’m very, very late for work, and I just have to get there!”

Once I was home (after four weeks in hospital), I often tried to step forward and do the right things. Apparently, one time I pulled on the heavy oven mitts…. then plunged my hands into the sink to wash the dishes.

In a coma state, a survivor may cry or/and seem agitated, and then don’t remember any of this when they regain consciousness. A survivor says, “ I am told that I was ‘weepy’ during the coma, but have absolutely no recollection of it.”

Wendy says, “I remember while still in hospital (around the 25th day), my Goodspouse was given permission to take me home for a brief afternoon visit. I remember feeling… nothing. I didn’t want to go. And I didn’t want NOT to go. A feeling of that type was beyond my ability at that time. I did what I was told. I knew that this was my family, my home. But… no emotion. And I was very comfortable to be taken back to my hospital bed.

It is my personal opinion that my brain was in such a state of catastrophe, my memory capability just shut down. As if, that was a part of my process which was not vital at the time, and could be put on hold. (Or, perhaps God thought that there was nothing happening in those four weeks, which would be a very nice memory for me...) After the four week hospital stay, I would go back to hospital two or three times a week, as an outpatient.

When will she be back to normal?

….”seeking the outcome? Ah, just be delighted, today, that your loved one is still here. The outcome will not be finalized for quite a while yet, my friend. While some zone, some area of his brain has been permanently destroyed; other areas of the brain will make every effort to 'fill the blanks'. The first six months after the illness will be the most remarkable, with two steps forward and one step back in progress. But, for long after that, small steps will be made, improvements here and there... Hang in, my friend...! “

How long until she 'gets well?' As you can imagine, every case is different... from a touch of encephalitis which folks don't even get diagnosed, to a very serious illness.

And, even at the date 18 months after my illness, I was told, "Wendy, take it easy. Slow down. Be kind to yourself. Be mellow. You are still healing." I suggested that I thought I had reached a sort of maximum, full measure of healing. Professional advisor said, "No. We will do another test, an EEG, at your two year mark. It is our opinion that healing is still happening."

The Catch 22? Well, it seems, it is not the best thing to push and strive to do more, accomplish more, and return to the 'old Wendy'.... I would be doing my self more benefit to be slow, to take it easy whenever possible.... pushing and stressing ourselves truly does more harm than good. Life has enough stress in our day-to-day existence. We are doing ourselves no favours by pushing ourselves, and raising the stress level.

There are certainly questions family may need to ask the doctor, including:

• Has a Neurologist seen her?

• How does she function, speech, walking, bladder control etc.?

• How is her memory (short term)?

• Has she had seizure(s) ?

• Do we know which type of encephalitis?

• What type of testing has been done? What results were found?

Post encephalitis - the first weeks and beyond

Activities for survivor

If I remember correctly (lol).... camaraderie was of the highest benefit of all. I would not have wanted to go out for a meal, or to a movie, or anything.... I was very comfortable and secure, being in my own home. My own father would handle this problem in a manner which now, in hindsight, I view as the best answer. Twice a week, he'd park his car out front... and we would go walking (which, deep inside, I was feeling a bit nervous about!). We'd walk to a nearby coffee shop. He would offer to buy me lunch, but I was never hungry. So, we would each order just a 'cup' of soup. Delicious, healthy, home made soup. I would only eat half of it... then we'd walk home again. Total distance, there plus back... half a mile.

That whole outing took about an hour....perhaps an hour and a half. And, that was truly enough! But, it made me move, got me going.... both physically, and mentally.

A friend continues… “Wendy is 100% on target about walking. At least in my case, walking wakes me up. And, if it’s long enough, and brisk enough to go a little aerobic, I get sharper and clearer mentally. If you are able to walk and talk, chances are you'll both feel a lot better about the situation after a good long, brisk, walk. A little hand holding goes a long way too! Even a scheduled walk.... as in.... "We must do our morning walk" ... or.... "...Our after dinner walk." “

Another friend comments, “ I’m just about at the end of my rope trying to get through this. I did find one thing that has helped me to cope. My doctor's prescribed "animal therapy" so I got a puppy. He makes me smile every day and I had gotten to a point where I was not able to do that due to my unhappiness and frustration with the whole headache thing. I've pretty much recovered except for the debilitating headache and the need for at least one extended period of rest every day. I usually require two rest periods. Just doing the simple task of laundry or emptying the dishwasher exhausts me to the point of having to take a break.”

How do you explain encephalitis to friends?

Members here were asked, “If you are in a social situation, and the topic of encephalitis comes up... how do you discuss/describe E? Does it become the topic for the next five minutes? The next ten minutes?”

I find so often, that I try to NOT pour my encephalitis into the conversation. I try to step back, and let other folks carry the topic. It's really very refreshing, to listen to friends talk, and be distracted to other topics. Refreshing, and relaxing, to let the conversation pour past. Usually, it was not my first choice to go out socially… so to sit back and let others converse is very relaxing. Then, by the time they’ve all talked out and turned to you… you can have a question or two ready.

Other times, when folks ASK me about my E, I find myself giving a brief answer. Then, if they encourage more, I get talking... and talking... and some times, it's like a dam has burst, and I find it rather difficult to stop!

Do you have friends outside the home who want to know more? Do you have friends who are uncomfortable to even hear the word? Or, (I hope!) friends who treat it just right, ask for an update, then carry on with another topic?

Since there are a lot of people who have known me for some time and did not know about the E. I notice their mouths open and they stare as if I am telling them some kind of Joke.

…herpes simplex encephalitis explained?

I also had Herpes Encephalitis in 1999. And I've come up with a way to explain it, to folks who don't understand. I start off by saying... "Have you ever had chicken pox, or shingles? (they reply 'yes') Ah, then you carry the herpes virus in your system. Most people do. In some very rare occasions, that virus manages to break through the natural barrier into the brain itself. That is herpes encephalitis." This is a very non-medical, non-professional way to explain it. But, it truly helps folks look in a different light. And puts their raised eyebrows BACK in PLACE !!

…and speaking of friends… How do your friends cope with the new you?

This is a toughie. I have to ask myself, “how would I have handled it if the situation was reversed?” Personally, I have been very lucky. A friend from my past, who I had seen two or three times in the past ten years, heard of my illness, and stepped forward. She made a date with me, to take me shopping, visit with me, whatever I wanted to do, every Thursday. A woman I’ve met since having encephalitis cannot understand what all the FUSS is about… she did not know the old Wendy, and is quite happy to be friends with the new one. A third friend, stood strongly beside me for a year post encephalitis… but we have slowly drifted apart, as the new Wendy cannot keep up with her.

Survivor’s self-confidence

This story describes when a survivor can be uncertain that his or her own judgment is correct. “OH, I'm so sorry. I apologize in advance. But, jeeze louise ! Usually, my Goodspouse comes with me weekly to do grocery shopping. But, I just ran up to Safeway, it's my daughter's day off of college, so I ran up to grab some bread and eggs for her. I've dealt with this Safeway for 20+ years. At the cash register, the screen indicated I should receive 8.24 change. I scooped the $3.24 from the change dispenser, the cashier handed me my receipt. Then I said, "Excuse me, shouldn't I receive a $5 bill?" She says, "I gave it to you already, with your receipt" "No, I'm still holding my receipt, and there's no $5 with it" I opened my wallet. My purse. Both of my hands. She shrugs. As I walked away, I said to her, "Please, remember my name. And, when your balance has an extra $5, do give me a call." Dammit, the old Wendy would have stood her ground. Stood strong. But, now.... I have two options. Walk .... or burst into tears. Oh, dammit dammit DAMMIT !

Social Security Disability Benefits, Disability Pension, etc. etc.

A member suggests…. Just some thoughts here because sometimes we overlook the obvious:

• Did she have Short Term Disability insurance?

• Long Term Disability, Insurance, or Life Insurance?

• Did your mortgage have a rider policy incase something happened like this?

• Did she ever get one of those Credit Card policies that cover you if you can't pay your bills because of something like this?

• Have you gone to the Social Security Office and Applied for SSDI?

• Have you gone to your State or County's Health and Human Services Departments to see what funds might be available?

These are just some things that though basic, may have been overlooked because of everything else that's going on.

Making these applications is difficult. Very, very difficult. As encephalitis is so very unknown and misunderstood, it seems to fall between the cracks when one is attempting to qualify for any type of government benefit or pension. It is VERY anticipated to be refused once, or even twice, before achieving qualification.

While struggling to qualify for benefits/pension, one must remain very intimately aware of their losses, and their in capabilities. It’s difficult to look forward while remaining closely focused on the past.

Oh, strength in support! Truly. That's what this site does for me.

I guess the problem is, as I've decided to be calm, to be mellow, to take one day at a time, and to be satisfied with the very simple lifestyle I have assumed.... Yes, I can be satisfied with all of that... EXCEPT!! Except, it's damn difficult to dig up sadness, and point out to Official Folks where I should be! Where I would have been! Where I was heading to, and cannot go any more! Both times that I was refused my pension, I have said, "WHY??" And both times, I've been told, "Oh, whoops, we missed such and such a fact. You probably should have qualified. Please try again. It looks optimistic for you." One time, I was told that a young person, who really didn’t understand encephalitis and was just new at the job, had evaluated me and they were so sorry, but she probably should not have refused me. Oh well. Try again." I am SICK of digging deep, digging up the depths of my sorrow to share it around. Trying to recall what hurts the most. What I am now the most inept at. The new Wendy is not bitter. I have truly become well settled with where I am.... and the fact that I am here at all ! And, I anticipate many quiet years, hanging out on this Site, and making dinner for Goodspouse. So, if anyone has a magic wand, and can make this Tribunal get on with it...please get this done before Xmas... that would be good.

Gawd, gimmie strength.... I'm mailing my request for Tribunal. This morning. Aarrgghh, it's so tough to get the stamina under this project.... to spend the time creating the letter... esp the hours Goodspouse and I spent Tuesday evening, re-living sadness, reviewing just how incompetent I really am. (Then, in October….)

Hooray!! I've today received acknowledgement that I've applied for a Tribunal appearance. The info is well written, to the point.... very easy for me to understand. And, they say, quite frankly, that it will probably take 9 months for me to receive a final decision. They lay it all out, step by step. Very, very well done. Okay, nine months. Well, I've certainly got nothing else to keep me busy! (I guess nine months is a rather long time for me to keep my fingers crossed, eh?)”

Disability application….

Consider the question… “Are you not capable for ANY type of work at ALL?”

A friend says, “I am still amazed that our SSDisability system expects a person to try to work at any menial job, just so the system can avoid paying benefits. Lets see...think I'll get a job at Burger King greeting customers. Well, too bad about the fact that the lights bother me...will just wear dark glasses & tell the manager I'm sorry that I need a nap after 2 hrs. since it takes me so long to get ready to go to work. Oh, yes, & please excuse me if I have to go home from a headache that came on due to noise & lights!!! I know you can relate to trying to express thoughts in a clear manner and check your spelling or typing 4 times. Sometimes I can't believe I am the one who has typed so many errors. So glad I can see to correct them & sometimes recognize them!! Well, enough for now. It is so great to have this and other groups who understand! “

...and if that was ME cooking burgers under such a stressful situation, I sure would be worried that there were fewer and fewer return customers !! (Hmmm... was that two bun bits around a burger, or two burger bits.....)

Of course, I'm teasing... but what you say is so true... Ah, stamina. Would that be one of the things we're 'missing' now?

Emotional Stamina

Comment posted…….As long as I have a very simple life, I manage just fine. I spent the afternoon with a very, very good friend. As I was leaving (about one hour ago), I felt the need to apologize to her.... and.... unfortunately, burst into tears, and I've been near sobbing ever since

Reply received….that is ok Wendy. I have done the same thing in front of truck drivers, teamsters and warehousemen. (; . Now THAT is embarrassing, especially for a guy. (:

Dizzy, Nausea

Ah.... what about your tummy, friends? I get the most unusual nausea spells now, post E. It happens three or four times a day.... a most unusual wave of nausea.... hang on.... hang on another moment.... then, it's gone. As long as I stand still and focus, it never becomes more than the passing feeling.

Headaches

…. weird headaches. They all started the same way, flu-like, he felt run down, and then he starts having these sharp stabbing pains in his head - I think always the right side. I mean unbearable ice pick stabbing pains every 2-3 minutes all day long - first time 12 days, last time 8 days, we are on our 5th day this time.

…. I get sharp shooting pains which feel like someone is twisting a screwdriver up through under my chin going straight up through the brain near both temples and sometimes behind one of my eyes. They don't last long, a minute to two, but scare the heck out of me. The incidence is sporadic and not often. I don't do anything special accept lie still and drift off to sleep. I'm usually afraid to move when I get them. I wouldn't call them headaches though. They are more like stabbing incidents.

Music Therapy

A friend at Encephalitis Global recommends, “Last summer my son Douglas did the Tomatis Listening Program...in Denver CO..There are many centers in the USA that do it and Canada as well. We also bought a home program. Douglas is legally blind and seems to operate monochannel but after the therapy he could use his ears and eyes at the same time. Many therapy locations are introducing listening therapy. Hope you have the results we did....”

Where the heck ARE the SPOONS?

I remember in my first days at home after being in hospital for four weeks with encephalitis. My mother and father had volunteered to supervise me during the day, so that my Goodspouse and children could go to work/school. My parents gently tried to let me do things for myself, but….. I poured myself a cup of coffee, then wanted to add sugar. But where, where would I find a spoon? I stood in the middle of my own kitchen, gazing around. Hmmmm. Spoons. Do they hang from the ceiling? No. Are they in the oven? Checked there… No. I’ll check my own pockets! No spoon there. OH! Perhaps the dog has them! No luck. So, I had to ask my ‘babysitter’…. My own mother. She pointed out the silverware drawer, and voila! Spoons! Now, that fact was returned to my brain, to my memory…. And I did not forget again.

Then of course, it was a year after first coming home, that my family told me of the evening when I insisted that I could help with the after dinner tidy up. I went over, put on two thick asbestos oven mitts…. and plunged my hands into the sink, to wash the dishes!